{"id":2178,"date":"2025-01-02T12:00:00","date_gmt":"2025-01-02T12:00:00","guid":{"rendered":"https:\/\/blogs.bmj.com\/spcare\/?p=2178"},"modified":"2025-04-04T12:22:14","modified_gmt":"2025-04-04T12:22:14","slug":"could-assisted-dying-for-terminal-anorexia-be-coming-to-the-nhs-by-chelsea-roff","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/spcare\/2025\/01\/02\/could-assisted-dying-for-terminal-anorexia-be-coming-to-the-nhs-by-chelsea-roff\/","title":{"rendered":"Could assisted dying for \u2018terminal anorexia\u2019 be coming to the NHS?"},"content":{"rendered":"

Author:<\/strong> Chelsea Roff<\/em><\/p>\n

\"Photo<\/p>\n

Chelsea is Executive Director of Eat Breathe Thrive<\/a>, a non-profit organisation that works to help people recover from eating disorders. Connect on X<\/a> and LinkedIn<\/a>.<\/em><\/p>\n

For an audio version of this post, please click here\u00a0<\/a><\/p>\n

Introduction:<\/strong><\/p>\n

When I first learned about a physician in Colorado helping patients with eating disorders die by assisted suicide, I was stunned. I hoped it was a tragic mistake. In the US, assisted suicide is only legal in a handful of states for people with terminal illness. How could someone with a mental illness qualify as terminally ill?<\/p>\n

I have spent my career running a charity to help people recover from eating disorders. I am also a researcher, so I turned to the literature for answers. How often had this happened? What medical rationales were being used to justify it? To my surprise, there were almost no studies on the subject. Scattered case reports from Belgium, the Netherlands, and Switzerland existed, but comprehensive data were lacking.<\/p>\n

To address this gap, my colleague Dr. Catherine Cook-Cottone and I conducted a systematic review to uncover how many patients with eating disorders had been assisted in death internationally (1). The findings were alarming: at least 60 patients with eating disorders had been assisted in death across Belgium, the Netherlands, and the US. A third were in their teens or twenties, and all were female. Troublingly, many of these deaths were not reported in public government documents, raising concerns that the failures of legal safeguards were going unnoticed.<\/p>\n

Terminal Anorexia and Loopholes in Assisted Dying Laws<\/strong><\/p>\n

Kim Leadbeater\u2019s Assisted Dying Bill aims to provide a framework for terminally ill patients to die by lethal medications prescribed by a physician. At first glance, its definition of a \u201cterminal condition\u201d\u2014 an \u201cinevitably progressive illness\u2026 which cannot be reversed by treatment\u2026 [for which] death\u2026 can reasonably be predicted within six months\u201d\u2014 appears clear and rigorous. However, similar definitions in other countries have allowed vulnerable young people with eating disorders to qualify for assisted death under concerning circumstances.<\/p>\n

Evidence from Oregon, California, and Colorado shows how definitions of terminal illness have been stretched to include eating disorders. Physicians have invoked the term \u201cterminal anorexia\u201d to assert that young women with anorexia qualify for assisted death:<\/p>\n

\u201cSince terminal anorexia <\/strong>clearly involves deteriorating physiological status due to malnutrition\u2026 this quality alone differentiates it from other psychiatric conditions.\u201d (2)<\/em><\/p>\n

\u201cAnorexia nervosa carries a guaranteed medical cause of death<\/strong> from malnutrition should weight loss continue unabated. A prognosis of less than six months <\/strong>can fairly be established when the patient stops engaging in active recovery work.\u201d (3)<\/em><\/p>\n

Some might argue these are exceptional cases and that anorexia would not be considered terminal in the UK. Yet similar reasoning has already been applied in British courts to withdraw treatment from women with anorexia. In The NHS Trust v L<\/a> (2012), the Court of Protection deemed a 29-year-old woman with anorexia to be in the \u201cterminal stage\u201d of her illness and concluded further treatment was not in her best interests:<\/p>\n

\u201cThe prospects of her recovery overall approach zero\u2026 given that it is extremely unlikely that Ms L will recover from her anorexia it is not in her best interests to make attempts to reverse her weight loss which require coercion, restraint or sedation\u2026 in best interests to move to palliative care if L [is] in terminal stage <\/strong>of her illness.\u201d<\/em><\/p>\n

There is no evidence for a \u2018terminal stage\u2019 of anorexia. Decades of research suggest that while eating disorders have high mortality rates, many deaths result from suicide or inadequate treatment (4, 5, 6) . The medical consequences of anorexia are largely reversible with sustained nutrition and weight restoration (7). In many cases we reviewed, clinicians presented a false dichotomy: coercive and forced treatment on one side, or death on the other. This may actively abandon patients who could recover with effective care.<\/p>\n

Does the Bill Exclude Those with Mental Illness?<\/strong><\/p>\n

Many believe concerns about eating disorders are unwarranted, as the bill explicitly excludes mental disorders as a sole qualifying condition for assisted dying. However, an analysis of the Bill\u2019s language and emerging clinical discourse suggests that eating disorders could still fall within its scope.<\/p>\n

The Assisted Dying Bill states<\/a> that \u201ca person is not considered terminally ill solely by reason of a mental illness.\u201d While this may appear protective, the inclusion of the word solely<\/em> creates ambiguity. Severe physical complications from malnutrition could potentially allow patients with eating disorders to qualify as terminal.<\/p>\n

This loophole has already been exploited in the US. Our research has identified a further 25 cases in Colorado and California where the qualifying terminal condition for assisted death was listed as malnutrition. Although the limited available data do not clarify whether these patients had anorexia nervosa, clinical discourse in confirmed cases raises concerns. For instance, in one case a physician justified prescribing a lethal medication for a 36-year-old woman with anorexia by describing her condition as \u201cterminal malnutrition\u201d:<\/p>\n

\u201cAs the human body can be exceptionally resilient even with terminal malnutrition<\/strong>, having the medications at hand would give [her] the opportunity while having an intact brain to choose not to suffer through additional weeks of extreme physical discomfort and weakness.\u201d (3)<\/em><\/p>\n

In another case, a physician likened anorexia to other physical conditions eligible for assisted dying:<\/p>\n

\u201cIndeed, highly regarded eating disorder authorities now consider AN to be a \u2018metabolo-psychiatric condition<\/strong>,\u2019 a claim not generally made for the other psychiatric disorders listed. No one would argue that metabolic disorders can\u2019t progress to terminal phases<\/strong>.\u201d (4)<\/em><\/p>\n

Efforts to empirically define a \u201cterminal stage\u201d of anorexia have been unsuccessful (6). While some rare complications of eating disorders, such as osteoporosis or gastrointestinal rupture, may be irreversible in the sense that they cannot be fully cured, they often improve significantly with renourishment and can be effectively managed with proper treatment (8). Many patients facing these complications recover and go on to live fulfilling lives (9).<\/p>\n

Can Irreversible But Manageable Conditions Qualify as Terminal?<\/strong><\/p>\n

This raises an important question: does the bill\u2019s definition of terminal condition adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care?<\/p>\n

One of the most troubling findings from our study was that many women who were assisted in suicide had not received adequate treatment. In some cases, clinicians declared their deaths inevitable despite many treatment options remaining unexplored. In one case, a physician suggested assisted suicide to a patient with anorexia who had never completed residential treatment. When her parents asked if any other treatment options remained, such as a feeding tube, the physician responded:<\/p>\n

\u00a0\u201cIf someone restricts the tube God gave them, (i.e., their esophagus), they would also be very likely to restrict [their food] through a surgical feeding tube, so that would not be a long-term solution.\u201d<\/em><\/p>\n

The implications extend beyond eating disorders. In Oregon, for example, government officials have confirmed that patients with diabetes can qualify for assisted dying if they decline or cannot afford insulin (10). The state\u2019s 2021 Death with Dignity report lists arthritis, hernias, kidney failure, and anorexia among conditions deemed eligible for assisted death\u2014conditions that, while incurable, are not inherently terminal when treated.<\/p>\n

In 2017, during Sweden\u2019s debate over assisted dying, researchers contacted Oregon officials to clarify how \u201cterminal illness\u201d is legally interpreted (10). They asked whether a diabetes patient declining insulin could qualify as terminal. The Oregon Health Authority confirmed:<\/p>\n

\u201cYes\u2014those patients would qualify\u2026. [the law] does not compel patients to have exhausted all treatment options first, or to continue current treatment\u2026 if the patient decides they don\u2019t want treatment, that is their choice.\u201d<\/strong><\/p>\n

When the researchers asked whether a diabetes patient who can\u2019t afford treatment would qualify a patient for assisted dying, the response was equally troubling:<\/p>\n

\u201cPatients\u2026 may not be able to afford some treatments<\/strong>\u2026 If the patient does not receive treatment or medication (for whatever reason) and is left with a terminal illness,<\/strong> then s\/he would qualify.\u201d<\/p>\n

These are deaths of poverty, not dignity.\u00a0 The similarities between Oregon\u2019s definition of terminal illness and the one proposed in the UK bill raise serious concerns about how the bill could be expanded through interpretation. Could a patient with a treatable illness, facing NHS delays or limited access to care, be deemed terminally ill if their death becomes foreseeable within six months due to lack of treatment?<\/p>\n

Conclusion<\/strong><\/p>\n

With a third reading on assisted dying looming, the question before lawmakers is whether this bill can be safely implemented within the NHS. Evidence from other countries shows how safeguards that appear rigorous on paper can be subject to varying interpretation in practice. Our research suggests that the failures of these safeguards often go unnoticed, buried in vague reports, with victims who are no longer alive to speak.<\/p>\n

References<\/strong><\/p>\n

    \n
  1. Roff, C., & Cook-Cottone, C. (2024). Assisted death in eating disorders: a systematic review of cases and clinical rationales. Frontiers in Psychiatry, 15. https:\/\/doi.org\/10.3389\/fpsyt.2024.1431771<\/li>\n
  2. Yager, J, Gaudiani, JL, Treem, J. Eating disorders and palliative care specialists require definitional consensus and clinical guidance regarding terminal anorexia nervosa: Addressing concerns and moving forward. Journal of Eating Disorders 2022;10(1):5<\/li>\n
  3. Gaudiani, J. L., Bogetz, A., & Yager, J. (2022). Terminal anorexia nervosa: Three cases and proposed clinical characteristics. Journal of Eating Disorders, 10(1), 23. https:\/\/doi.org\/10.1186\/s40337-022-00548-3<\/li>\n
  4. Crow, S. J. (2023). Terminal anorexia nervosa cannot currently be identified. International Journal of Eating Disorders. https:\/\/doi.org\/10.1002\/eat.23957<\/a><\/li>\n
  5. Guarda, A. S., Hanson, A., Mehler, P., & Westmoreland, P. (2022). Terminal anorexia nervosa is a dangerous term: It cannot, and should not, be defined. Journal of Eating Disorders, 10(1), 79. https:\/\/doi.org\/10.1186\/s40337-022-00599-6<\/li>\n
  6. Robison, M., Udupa, N. S., Abber, S. R., Duffy, A., Riddle, M., Manwaring, J., Rienecke, R. D., Westmoreland, P., Blalock, D. V., Le Grange, D., Mehler, P. S., & Joiner, T. E. (2024). \u201cTerminal anorexia nervosa\u201d may not be terminal: An empirical evaluation. Journal of Psychopathology and Clinical Science, 133(3), 285\u2013296. https:\/\/doi.org\/10.1037\/abn0000912<\/li>\n
  7. Westmoreland P, Krantz MJ, Mehler PS. Medical Complications of Anorexia Nervosa and Bulimia. Am J Med. 2016 Jan;129(1):30-7. doi: 10.1016\/j.amjmed.2015.06.031. Epub 2015 Jul 10. PMID: 26169883.<\/li>\n
  8. Mehler, P.S., Krantz, M.J. & Sachs, K.V. Treatments of medical complications of anorexia nervosa and bulimia nervosa. J Eat Disord 3, 15 (2015). https:\/\/doi.org\/10.1186\/s40337-015-0041-7<\/li>\n
  9. Eddy, K. T., Tabri, N., Thomas, J. J., Murray, H. B., Keshaviah, A., Hastings, E., Edkins, K., Krishna, M., Herzog, D. B., Keel, P. K., & Franko, D. L. (2016). Recovery From Anorexia Nervosa and Bulimia Nervosa at 22-Year Follow-Up. The Journal of Clinical Psychiatry, 78(02), 184\u2013189. https:\/\/doi.org\/10.4088\/jcp.15m10393\u00a0<\/a><\/li>\n
  10. Stahle, F. (2018). Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model.<\/li>\n<\/ol>\n

    Author<\/strong><\/p>\n

    \"Photo<\/p>\n

    Chelsea Roff<\/strong><\/p>\n

    Chelsea is Executive Director of Eat Breathe Thrive<\/a>, a nonprofit organisation that works to help people recover from eating disorders. Connect on X<\/a> and LinkedIn<\/a>.<\/p>\n

    Declaration of interests<\/b><\/p>\n

    I have read and understood the BMJ Group policy on declaration of interests and declare the following interests: none.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

    Author: Chelsea Roff Chelsea is Executive Director of Eat Breathe Thrive, a non-profit organisation that works to help people recover from eating disorders. Connect on X and LinkedIn. For an audio version of this post, please click here\u00a0 Introduction: When I first learned about a physician in Colorado helping patients with eating disorders die by […]<\/p>\n

    Read More…<\/a><\/p>\n","protected":false},"author":470,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2867,109],"tags":[],"class_list":["post-2178","post","type-post","status-publish","format-standard","hentry","category-assisted-dying","category-comment"],"_links":{"self":[{"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/posts\/2178","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/users\/470"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/comments?post=2178"}],"version-history":[{"count":0,"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/posts\/2178\/revisions"}],"wp:attachment":[{"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/media?parent=2178"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/categories?post=2178"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.bmj.com\/spcare\/wp-json\/wp\/v2\/tags?post=2178"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}